Hi, im 21 F! I am comin up 1 year post transplant this Saturday (yay). I was just wondering if anyone went back to smoking weed? At the moment I do take edibles, but I truthfully miss smoking/vaping. The first time i got cancer i smoked throughout treatment but heard SCT are a lot more aggressive than chemo alone, so I refrained and was sober for the first 100 days, then moved on to micro dosing, and now im a somewhat regular gummy user. Gummies are cool but getting expensive and i just overall prefer smoking/vaping, so im wondering if anyone got cleared to do so or if its just best not to.

i weigh about 315lbs and my hematologist told me today that my weight is a complicating factor to receiving/recovering from a bone marrow transplant. i have an appointment with an endocrinologist next week to discuss glp-1s. i’ve been on ozempic before and had severe side effects so i stopped taking it and didn’t try any alternatives before my first cancer diagnosis (before AML). i asked my solid tumor team about weight loss medication once i was a couple of months out from finishing treatment and they were unsure. my hematologist however feels it could be helpful.

has anyone had a similar experience? gotten a transplant and recovered while obese? intentionally lost weight for a transplant? been on a glp-1 during leukemia treatment/chemo in general? i’m actively on oral chemo and with my appetite and energy level i’m worried i won’t lose as much weight as i need to, especially if a glp-1 isn’t approved or if im not tolerating it well.

any advice or personal stories would be greatly appreciated.

f28 2 years in remission from AML (runx1, 8;21).

Every time I get sick it’s the same story. I feel like i’m dying again, like i’m relapsing, like it’s all over again. I woke up in sweat this morning and i’ve been crying all morning about it. my team is likely sick of hearing from me, especially since i passed the 2 year mark recently.

I feel like i’ll never feel safe in my own body ever again. even when all tests come back clear, the sense of security has been stripped from me.

I’m 26 and lost my dad (56) on December 30, 2025, just two days after he was diagnosed with acute myeloid leukemia (AML). Everything happened so incredibly fast, and I’m hoping to connect with other young adults who lost a parent suddenly to AML or another aggressive cancer.
I’m especially interested in hearing from people who had almost no time to process the diagnosis before losing their parent. I’d really love to talk to others who understand this experience.

My 36 yo sis is diagnosed with AML and is right now on Aza Ven and medication for a lung infection. She has been hospitalised for more than a week.

I want to get her everything that can take her mind away for some time / make the hospital stay less unbearable.Those little things that we forget

please suggest.

for instance, i realised she needs vaseline for chapped lips.

Hi, everyone. I (23M) was recently diagnosed with CML last week. I went to the hospital for papilledema (swelling in the optic nerves) and was given my diagnosis last Friday. For the most part, I’ve been ok. What I’m recovering from right now is the spinal tap they did to address the papilledema a few days ago. In addition to that I’ve had follow ups, phone calls, numerous labs, and a multitude of other things happen to me in this past week. It’s crazy to me to think that this time last week I was in a classroom teaching and my life would drastically change overnight.

Mentally and emotionally I’ve been ok. It helped that my oncologist told me I wouldn’t have to make drastic lifestyle changes or have any aggressive or invasive treatments. What nobody prepared me for is the constant poking a prodding. Not just talking about labs, but the barrages of checks ins from friends and family. Not that I’m not grateful for them. Every time I find myself getting upset, I chide myself and remind myself how blessed I am to have the support system I have. But sometimes it gets overwhelming if I’m being honest. I guess I foolishly expected life to not change as much but how could it not when I received a diagnosis like this? Also, part of me feels if I didn’t have the spinal tap, I’d feel a lot better. I know it was necessary, but recovery has been the worst. All I’ve wanted to do these last few days is sleep and be left alone.

Anyways, I have to start desatinib soon and wanted to know what life on that medication would look like. Like, what are some side effects you all have experienced and what did your mental and emotional states look like while batting CML? What are some things I should keep in mind? Anything helps!

TL;DR: I (23M) was recently diagnosed. What are some things I should be aware of or keep in mind as I start this journey of battling CML?

Buen día quiero compartirles que estoy muy triste porque mi esposo falleció hace unas semanas por la complicación de neumonía el se encontraba en etapa de cuidados paliativos por Leucemia Mieloide Aguda, tenía 44 años. Nos deja mucho recuerdos, siempre fue una persona que lucho contra la enfermedad ya que su diágnostico fué en febrero de 2022, pasó por el tramiento de inducción y consolidación, por un trasplante de médula que lo mantuvo en remisión durante más de un año, luego vino la recaída y siguió luchando hasta pasar por un segundo trasplante...pero en febrero del año pasado tuvo otra recaída y a partir de ahí estuvo con azacitidina y venetoclax durante 1 año y cinco meses en remisión con ese tratamieto, a la par estaba en protocolo para un tercer trasplante, lamentablemente la recaída lo alcanzo y a pesar de que había pasado todas las pruebas del protocolo falleció antes de poder realizarlo. Casi 5 años estuvo en lucha, pero está enfermedad es terrible. Lo amo mucho y lo voy a extrañar siempre, me deja dos hijos y 21 años de recuerdos que atesoro con todo mi corazón.

Hi all,

I’ve mostly been a lurker the past 4 months since my mama (70F) was diagnosed with AML. It’s been a whirlwind and this community has got me through some tough times - so thank you.

My mum’s SCT/bone marrow transplant got bumped forward and I will be flying from London UK to New Zealand be her donor next week. My mum is extremely concerned about me being a donor and is set on believing it will harm me in the long term. I’m donating regardless but it’s definitely got me nervous.

Has anyone here been a stem cell donor? I would love to hear any experiences you could share about the donor experience and what to prepare for mentally or physically! Thanks in advance 🫶

I recently saw this post: https://www.instagram.com/reel/DebtvT8pGlp/

Is it really great??

Just wanted to vent. My 17 year old son passed away in August from APL. From the time of his first symptom to passing away was only 6 days.

It started with neck pain, next day a headache, then the next his leg wasn't working. I took him to the local ER.. They did some tests and rushed him to the bigger hospital.

That was a Sunday. He was gone on Wednesday.

I'm still in shock and expect him to come home from school. I still forget and buy things for him at the store.

I'm still so angry. I just doesn't feel fair that he left the world so young.

Hi,

Not sure what I’m looking to ask besides just some words of comfort my partner 31 (m) was diagnosed yesterday. We have 5 children. I’m in shock. I don’t know how to explain this pain of not being able to make him better.

Hey everyone

My little nephew who is 2 years 8 months old relapsed from B-ALL while still in maintenance therapy.

His treating team is suggesting two options we can go for after his reinduction treatment. One is one cycle of blinatumomab and one is CAR-T.

With blinatumomab we will definitely have to go for a bone marrow transplant after. I understand that With CAR-T there is 50% chance that a BMT/SCT may not be needed.

We are now considering if avoiding a BMT may be worth enough to go CAR-T route. Please also note that we are unable to find a match for him as of now. His two sisters were 5/12 haplo match. His parents are being tested now.

Thank you!

For background, I am a 23 year old person diagnosed with AML this past July. After a 2-month admission and 2 rounds of effective chemo, I went into my allogenic stem cell transplant in complete remission with a 10/10 marker donor of the same blood type. I don't want to complain since everything that could go right has gone right, but holy hell the GI pain and associated diahrrea is awful. My doctors know about and expected this, and I've taken immodoium and famantodine (or whatever it's called) but it hasn't helped much. Advice?? Please??

My 36 year old sister is diagnosed with AML. This came out of nowhere as she was doing well few weeks back. and now her blast cells are 80%. We are devastated - have never had anyone with cancer in family. She is hospitalised in a top cancer hospital in Delhi. Her treatment hasn’t started because she has an infection that is causing her high fever and chills. Doctors have been still doing tests to find out the infection.

please tell us what all we can do to get her to cure and support her. We are just learning everything from chatgpt and have no idea which markers (blast cells, tlc, anc) to look for.

She has 2 young kids.

Hi everyone,
My 9-year-old son was recently diagnosed with stage IIA, non-bulky classical Hodgkin lymphoma. His oncologist is strongly recommending that we consider participating in the Phase 3 COG clinical trial AHOD2131, involving brentuximab vedotin and nivolumab.
I’ve been told these medications have shown very promising results in more advanced Hodgkin lymphoma, and the hope is to achieve equal or better cure rates with fewer long-term side effects.
I’m having a difficult time deciding between the clinical trial and standard chemotherapy, especially because the long-term results of this particular treatment aren’t established yet.
Has anyone here participated in AHOD2131, or received brentuximab and nivolumab?
I’d really appreciate hearing about your experience, side effects, treatment outcomes, and what helped you make your decision.
Thank you!

​

Hi everyone,

My dad is 54 years old and was diagnosed with CLL, Rai stage III. He has been taking acalabrutinib (Calquence) for approximately 3 months. I’m trying to understand whether his blood count trend can still be part of the expected response to treatment, or whether it warrants further evaluation.

Here are his CBC results over time:

Before starting acalabrutinib:

- Total WBC/TLC: 35.58 × 10³/µL

- Absolute lymphocyte count (ALC): 30.46 × 10³/µL

- Hemoglobin: 11.7 g/dL

- Platelets: 111 × 10³/µL

After approximately 1 month:

- Total WBC/TLC: 121.1 × 10³/µL

- ALC: 113.4 × 10³/µL

- Hemoglobin: 10.9 g/dL

- Platelets: 162 × 10³/µL

After approximately 3 months (latest report):

- Total WBC/TLC: 148.33 × 10³/µL

- ALC: 139.88 × 10³/µL

- Lymphocytes: 94.3%

- Hemoglobin: 11.3 g/dL

- Platelets: 184 × 10³/µL

- Absolute neutrophil count (ANC): 7.12 × 10³/µL

The peripheral smear mentions lymphoid cells, smudge cells and prolymphocytes, consistent with his known CLL.

His hemoglobin has improved slightly from the 1-month result, and his platelet count has increased. However, his WBC and ALC have continued to rise, including between months 1 and 3.

His latest blood chemistry results also showed:

- Creatinine: 1.33 mg/dL

- eGFR: 64 mL/min/1.73 m²

- Urea: 56.4 mg/dL

- Uric acid: 8.33 mg/dL

We understand that BTK inhibitors such as acalabrutinib can cause redistribution lymphocytosis, where lymphocytes move from tissues into the bloodstream after treatment begins. What I’m unsure about is whether a continued rise at around the 3-month mark, particularly to these levels, is something others have experienced.

For those who have taken acalabrutinib, or caregivers whose family members have:

1. Did your WBC/ALC continue rising for around 3 months before starting to fall?

2. How long did it take for your counts to begin decreasing or normalize?

3. Did your hematologist assess the overall response using other findings, such as lymph node or spleen size, symptoms, hemoglobin and platelets, rather than the WBC alone?

4. Is there anything you would specifically recommend asking his hematologist about with this trend?

We will discuss the latest results with his hematologist. I’m not looking to replace medical advice—just hoping to hear about other people’s experiences with the timeline of response to acalabrutinib.

Thank you for reading and for sharing your experiences.

I’m not even getting that great of answers from AI, and I could probably wait for more results, but I don’t want to.

My husband’s AML mutations were CEBPA with GATA2, WT1, and JAK3. He went into mrd-negative remission after one round of induction and continued with four rounds of chemo. (No SCT).

We’re six months out from that last dose of chemo and his BMB flow is mrd-negative but the NGS came back with TP53 circled in red (so it’s there). It’s a low VAF (<5%) and sequenced as TP53 R282Q. None of his original mutations appear alongside. Just TP53.

So the timeline is:
- Dec 2025, post-induction: MRD- and no mutations via NGS.
- Mar 2026, mid-consolidation: MRD- and no mutations via NGS.
- Jun 2026, post-consolidation: MRD- and no mutations.
- Oct 2026, 6-mont post treatment: MRD- and only TP53 on NGS.

Anyone technical here?

So for context, i am a 41 year old woman, no kids, no partner, dog has cancer, live in a sharehouse, just finished treatment for triple negative breast cancer just over a year ago, i handled that quite well, did the whole chemo, radiation,immuno and double mastectomy.

Finally the hairs back and im feeling good.

But ive just been diagnosed with aml, i always said if cancer came back i wouldnt treat it again, id let it take me, i dont want to go through all of that again,ive spent my life being depressed, wanting it to all end, ive lived a life of anxiety- scared about where im going to life and how im going to afford life, im tired of struggling in life, i beat cancer the first time for my family and friends but now i want to make this decision for me.

I dont know how to go about this, i kind of want to keep it from my family and friends for as long as i can, my best friend knows and she is a great support but i dont want those around me to be sad, and give me lots of love and attention, i want to live the rest of my life the way it is normally, as ive experienced life after cancer and it goes back to the standard amount of love so i dont want that extra love clouding my decision

In about a month and a half, I’ll have reached one year in remission! And as amazing as that is, I have to wonder if the anxiety of a relapse ever really goes away? I find myself considering every pain I have to my initial pain pre-diagnosis.

To be very clear, I am very grateful to be in the position I am currently, and I know I shouldn’t worry about what I can’t control. But does anyone else have similar thoughts/feels? I’m sure it’s a common thing, but it drives me a little batty to constantly be questioning “is this pain another lesion forming?” Or “is this going to be the appointment they tell me my blood work is off??”

Anyone else?